After having such a good week last week, I had high expectations going into this week. It was my birthday and my husband I had a date planned. Audrey had been doing well so I knew it would be good. During Audrey's feeding therapy last week she choked and aspirated on some juice. The rest of the weekend she was pretty tired and seemed to need her oxygen a little more often. She seemed fine otherwise so I wasn't worried. Sunday was great! We started with a early morning high in T.O. It was beautiful outside and nice to get a little excersise. Then I took some time for myself and got my nails done and a haircut. We had a babysitter for the kids and me and the hubby went out to the Melting Pot! Yay, after over a year we finally made it back! It was a great night and we even avoided talking about the kids while we were out aside from agreeing there was no way we would bring them there!
Tuesday was my birthday. 29 years old now. I'm not really concerned about my age but it does seem odd to think I'm almost in my 30's! Other than that we didn't do much. I worked all day so I didn't get home till 645. We did have pink cupcakes which Audrey really enjoyed :)
I was looking forward to Wednesday. Finally, after 14 months on the waiting list, Audrey is going to start at the daycare at the hospital. Wednesday was my orientation day with her teacher. I was nervous that they would not be able to accommodate her special needs. So after letting her go through the spiel of what they do and how they do it I introduced that she has some feeding problems and is on special thickened fluids. She is also prone to choking during her meals so she needs to be closely supervised while she eats. We strategized ways to be sure she was safe during mealtime. Next I brought up she uses oxygen while she sleeps. This was again discussed and decided it would probably be ok. I left it at that. There's so much more but I felt I had pushed them far enough for one day. I met with the director to discuss these things and she was fine with the oxygen if I could show the teachers how to use it. No problem! Feeling mixed emotions I returned to the office to continue my busy day. I checked my voicemail and Audrey's current daycare had called. It couldn't be anything bad since they didn't call my cellphone or page me. I returned the call and they said she had this episode where she kept falling down. They went over to help her stand and she immediately fell over. When they picked her up her face was really pale and her lips were purple. They put her oxygen on her and she fell asleep. She had been asleep since then...2 hours before. I hung up and burst into tears. Not particularly helpful but unavoidable. Things had been going so well I knew I was beginning to think this was all just a bad dream. By the time I picked her up she seemed ok. I woke her up from her nap and she continued to be very sleepy but nothing obviously wrong.
Thursday her daycare was nervous with her. I was relieved because I knew they would call right away for anything after the day before. We talked about paging me since I'm not always in my office. The day went fine. When I picked her up they said she was a little congested. By the time we got home she had a fever of 100. Ugh, it gets better and better! Loaded her up with her meds and off to bed she went.
Friday her temp was 99. So I was ok with that. She had some congestion and a runny nose but seemed ok otherwise. Now it was time for feeding therapy again! Back to CHLA we went. It was a very long hour with a stubborn 2-year-old who did not want to hear that she could only take 2 sips before we took her cup away and she could only take one bite at a time before we moved her plate away. The session ended with her sitting backwards in her chair refusing to make eye contact or speak to anyone. This was helpful and I'm glad I get to spend $25 every week for this. Next we went to the new daycare to drop off all her enrollment papers. She got to see the building and her new classroom. We took her out to the playground where her class was and she got to play. Then it was time to go. That was unfortunate...at least I know she'll like playing there! I was also relieved because I think she'll be able to play without needing her oxygen which is good since I hadn't discussed this yet with the teachers. Next we went back home. Audrey got to nap and mommy got to figure out where her formula authorization was and wait for her oxygen delivery. After 2 hours on the phone it was obvious she wasn't getting her formula this week. This is all so complicated! I got a call from her regional center coordinator to schedule her therapies to start in the next week or so to overload our Friday's even more! How much longer will I be able to keep doing this? Everyday I spend time on the phone, scheduling appointments or calling insurance companies, ordering supplies, going to appointments and therapies all the while I work full time and have another child and a husband who need my time also. Nearly everyday I think about quiting my job and going back to the NICU. At least there I could work Fri-Sun and not have to worry about daycare and only making appointments on Fridays. I haven't given up yet. I still like my job and Audrey likes daycare where she gets to see other children. I know it may come to that but for now we'll keep pluggin' along and hope for the best!
No comments:
Post a Comment